Constant pain

[SK2021]

Hi all hoping someone can put my mind at rest. I have severe stage 4 endometriosis and I’ve been in pain the last few months non stop. Just checking if anyone else has pain on a daily basis not just when they’re on their period? My gp seems to think it shouldn’t be everyday so now im panicking ☹️ X

[Purple_Badgers]

Hi! Unfortunately, your GP is misinformed. Many endo sufferers, including myself, have daily pain not just at menstruation or ovulation. There can be lesions and adhesions all over the pelvis and beyond, causing damage and restriction to the organs, which is definitely not limited to certain days of your menstrual cycle.Mine is severe/ deep infiltrating endo on the bowel with adhesions and also endosalpingiosis (similar to endo, but on ovaries). I have constant pain in whole pelvic area, groin, bowels, bladder, hips, back, legs and often shooting pains in vagina/rectum at random. Also severe endo does tend to get worse quite quickly, as it creates its own oestrogen, so there absolutely be a sudden intensifying of symptoms.

(I’m assuming that there aren’t other weird symptoms which are making your gp think it’s something else?) xxx

[SK2021 in reply to Purple_Badgers]

Hi thank you so much for your response! You’ve really made me feel better as I was feeling like I’m the only person in pain every day. I have recently been diagnosed with stage 4 rectovaginal endo and my bowels are affected similar to you. I also have all the symptoms you have on a daily basis. I rang my gp to discuss pain relief but felt she didn’t know much about the condition, instead I just felt upset after the convo with her ☹️.

Thanks again for reaching out xx 😘

[Jmiller623]

I had back pain all day everyday. Just had surgery 12/20 and back pain is almost completely gone. Your GP is wrong. And if it helps, I’m a physician in the US. Had no idea what endo could do.

[SK2021 in reply to Jmiller623]

Hi thanks for your response. So how are you feeling now after your surgery? I’m still waiting could be waiting 6-12 months even though my case is severe due to covid

[Jmiller623 in reply to SK2021]

Still feeling good. Incisions are healing nicely. Some bruising. I can feel some burning on the inside from where they excised stuff but nothing like the pain I was having before surgery. I had huge cysts and implants everywhere so definitely deep infiltrating. Happy to share images if you’d like. I am up and about like normal. My husband has to actively keep me couch bound.

I actually feel like I waited much too long to get surgery and it was because I feared invasive surgery. If your case is severe and you have symptoms, I cannot recommend this surgery enough as long as it is done by an endo specialist.

[SK2021 in reply to Jmiller623]

Hey yes please I would be interested in seeing the pics if you don’t mind. I really want the surgery but keep being told it’s delayed due to covid first it was 3 months waiting time now up to 12 months. Also they mentioned doing a stage 1 diagnostic larproscopy first to take proper pics as endo is close to or on my bowel. Then they’ll review images and decide on more invasive surgery. I’m just sick of being in pain all the time xx

[Em1210]

Hi Sk2021 I also have stage 4 endometriosis I'm in pain everyday. Especially certain times of your cycle. Just some advice, I have been on a gluten free, dairy free and caffeine free diet also limiting myself to just wine for alcohol. I have notice a real change in my body since doing it. The swelling is less and also flare ups are milder. If you keep a diary of what you have eaten, done that has caused pain you can identify what could be causing the pain. Obvs I know with endo that it can come out of nowhere without reason . Doctors have very limited knowledge of our condition due to it being an invisible illness. With stage 4 endo you have it in quite a lot of places that doctors would never even think of which make symptoms worse. I'm so sorry to hear your in pain all the time but I really hopes this helps, thinking of you and hope you can enjoy the festive period xxx

[SK2021 in reply to Em1210]

Hey thanks for reaching out! Ahhh thank you I will look at altering my diet to see if it helps. Willing to try anything tbh. Just sick of the constant pain. Hope you’re managing your symptoms well have a lovely Christmas xxx

[st07 in reply to SK2021]

I’ve also been in paid 3 out of 4 weeks regularly, got better after surgery. But also I’ve just gone on FODMAP with the help of nhs dietitian (I requested it from gp) and I can see it’s gotten better. First, I’m not at all constipated anymore which used to be constant, not feeling nauseous as much and almost not bloated, so out of my own experience I would recommend looking into it! Hope your help will improve soon xx

[SK2021 in reply to st07]

Thank you! Looking in to the fodmap diet as we speak xx

[FairyM]

Hi, I also have stage 4 endo with bowel, uterus, ovaries & bladder fused together. I have daily pain that can suddenly worsen. I'm awaiting a hysterectomy & bowel surgery in the new year & my consultant has put me on monthly Prostap injections to put me into menopause with Tibolone as add back HRT. This has reduced my pain to the odd flare up now which is great but I'm balancing that with side effects from the treatment. As others have said your dr is misinformed & hope you get the help you need x

[SK2021 in reply to FairyM]

Thanks for your reply! Yes unfortunately my doctor just made me panic I don’t think she understood the condition really well. I hope I can get sorted too just waiting for sugery now. Hope everything is ok with you xx

[scouterpuff]

By the responses you've received so far, you have to know you are not alone in experiencing constant pain. I wake up in the middle of the night (almost every night) with pain, pain, and more pain. I try to maintain an active life, but the pain can knock me off my feet some days. Purple Badgers is right. And I am so dang sick of encountering doctor after doctor that has no clue what they are talking about in regards to this disease. I really wish they could feel my pain for just one day. Hugs.

[SK2021 in reply to scouterpuff]

Hey thank you so much for your response! You guys are giving me hope when I need it most. I was starting to feel like I’m the only person that is in pain every single day. No one understands or cares do they…xx

[Bubblepoppy]

I also have pain every day your not alone xx

[SK2021 in reply to Bubblepoppy]

Thank you xxx

[ParisianInLondon]

I have severe stage IV endometriosis as well and I have really terrible pain on a daily basis as well, it’s not just on my period or when I’m ovulating. I also experience excruciating pain my legs, back and vagina.

You are not alone. ❤️

[SK2021 in reply to ParisianInLondon]

Hey aww thank you for reaching out. My pains are exactly as yours are in the same area. I’m just sick of taking strong pain relief every single day want to live a normal active lifestyle I’m only 31 ☹️ Xx